Thursday, 5 March 2015

New car seat…

The most frustrating part of having a degenerative condition is that your body is constantly deteriorating. I am totally aware of these changes but there is nothing I can do to prevent my Friedreich’s Ataxia from getting worse. Back in June 2013, I got a Kia Venga and was really happy with my new car. I still love Arsène (as my dad calls it) but there is a problem with the way I transfer. This problem is nothing new but I have buried my head in the sand for too long and have only recently accepted that I need to address this issue before either me or my carers get seriously hurt.

I don't normally have my parents on hand to assist so the transfer is even more difficult than it looks...

I currently have a turnout system so the passenger seat swivels out to the side and I move across into my wheelchair. That used to be fine because I could (with the support of the car door) stand, pivot and then smoothly sit down. Now my legs are weaker, I end up basically flinging my body across and hoping that I don’t hit the floor. Increasingly, I am ending up on the deck and have to rely on passers by to lift my hefty frame up. This happened twice today; once in town and once on my driveway. Luckily, there were people around to help on both occasions, otherwise my carer and I would have been stuck for ideas.

The system I have at the moment....

However, there is a simple solution but I cannot afford it. The system is called the Carony Classic and, although the basic price is roughly £3080, the add-ons mean that it will end up costing £3734. Unfortunately, I do not have that sort of money so have decided to set up a donations page in the hope that people will be able to assist me. The site (www.crowdfunder.co.uk/carony-classic-wheelchair-system) is easy to use and will make sure the money is given directly to the cause. I understand that times are hard but the floor is often harder. But on a serious note, I would very much appreciate if you donated whatever you can.

The Carony Classic will completely eliminate dangerous transfers like this!

I will give frequent updates on how the fundraising is going so make sure you check back to the page regularly (although I will share any news on here of course). You’ll also notice on the site that there are rewards if you give a certain amount so be sure to check them out!

11 comments:

I can only imagine the frustrations you have to go through because of your condition, so it’s really nice to know that you’ve found ways to make things easier for you. On that note, I think that the Carony Classic is a great equipment, and can be very useful for you and your carer. Anyway, how is the fundraising going? I hope things are doing well. Thanks for sharing this with us. All the best!

Suffering from Friedreich’s Ataxia may be a difficult ordeal, but you are really brave and courageous to get through with it day by day. Anyway, it's good to know that you have a fundraising going on, in order for you to obtain a Carony Classic for your car, which will really be a big help to you. I hope that the number of donations are increasing. Thanks for sharing that! I wish you all the best!

Congratulations on the successful funding of your new wheelchair! How are you now? You’re a very strong person, and I hope that you’ll continue writing on your blog for us to see any updates about you. You truly are a great individual as you post in your blog to inspire other people with the same condition as you. Thank you for sharing your experiences to us.

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